Our mission is to improve diagnosis, treatment and outcome of rare cancers, by performing translational research, clinical studies, and population-based research. This is achieved in close collaboration with (inter)national partners and patient advocacy groups.
Today, two and a half million patients are living with a diagnosis of rare cancers in Europe and every year there are 488,000 new diagnoses of malignant rare cancers. Despite the rarity of each of the 223 types of rare cancer, in total they represent about 22% of all cancer cases. According to recent analysis
, Rare cancers are defined as those with an incidence of less than 6 per 100,000 persons per year. In the Netherlands this amounts to a total of 23,000 new patients per year. Patients with a rare cancer have a 15% poorer overall survival rate than patients with a common cancer. Although an improvement in the prognosis of common cancers has been observed during the last five years, this has not been achieved in rare cancers. Examples of rare cancers are head and neck cancer, sarcoma, thyroid cancer, neuroendocrine cancer, brain tumors, various hematological malignancies, and pediatric cancer.
Rare cancers pose particular challenges due to their type-specific low frequency, including:
- Late or incorrect diagnosis, partly due to late recognition and limited awareness by patients and general practitioners.
- Lack of concentrated care and expertise.
- Lack of access to appropriate therapies and clinical expertise.
- A relatively small number of clinical trials due to the small number of patients.
- Lack of interest in the development of new therapies due to market limitations; limited development or availability of disease directed drugs.
- Few available registries and tissue banks; lack of preclinical models (cell lines, organoids, patient-derived xenografts) for basic and translational research.
- Until recently, low on the political agenda of the international community.
The research of this theme focuses on seven main domains, four of which are connected with domains in the European Reference Network (ERN) for adult rare solid cancers (EURACAN
), and one with EuroBloodNet
(for rare hematological diseases).
These domains are:
- Head and neck cancer, including salivary gland cancer and skull base cancer
- Endocrine tumors
- Brain tumors
- Rare hematological malignancies
Furthermore, two other research domains are part of the theme:
- Adolescent and Young Adult (AYA) research
- Lung and trachea cancers
- We aim to remedy late or incorrect diagnosis records.
- We aim to improve access to appropriate therapies and clinical expertise.
- We will raise the number of clinical trials in spite of the small number of patients.
- We will endeavor to raise market interests in the development of new therapies.
- We will seek to improve the number of available registries and tissue banks.